Chairi 1 malformation

[Jordy36]

I have recently had a MRI and the results came back that I have Chairi 1 malformation with tonsillar descent 9mm below the foramen magnum with complete effacement of the CSF space. Can someone please tell me what this means?

[selmaS]

  I am so happy for you that you found a Dr able to help you.....

Did they rue out ALL related conditions too?

Keep us posted on your surgery date and progress.

[Jordy36]

I finally had my appointment with my neuro surgeon yesterday and he was very knowledgeable with Chairi. He advised after looking at my MRI scans that I need surgery. I am very nervous but know that I cannot live the way that I am living now and even if the surgery only makes me feel 50% better than at least it is something. The surgeon I went to was in Melbourne Australia and he was great. Fingers crossed all goes well with the surgery.

[selmaS]

  Your symptoms are typical for Chiari.....

More testing should be done to check for related conditions as they can cause many of the same symptoms....

Chiari symptoms cycle so they can appear to come and go,,,,and even flare and seem worse at times....we can affect the flare ups by avoiding certain activities...

See if you are close to any of the Drs on the list and do some research on them....and try to have testing  for ALL related conditions so they can be ruled out..

Keep a journal of your symptoms....what they are , how long they last, if they worsened....and what you did b4 so you can see if any of your activities triggered them.

And ask questions and we will try to answer as many as we can.

[Jordy36]

Thanks for replying to my message. I have the following symptoms:-

Dizziness
Headaches - Migraines
Tinnitus that comes and goes
Blurred vision
Face twitching especially my eyes and around my mouth
Neck pain
Trouble swallowing - comes and goes
Memory loss - cannot remember what I'm trying to say
Pins and needles in my arms and legs

That is all I can think of at the moment.

The exact wording on my MRI report says:

Chiari 1 malformation with tonsillar descent 9mm below the foramen magnum with complete effacement of the CSF space, but only minimal mass effect on the craniocervical junction.
Chiari 1 malformation without obstructive hydrocephalus.

[selmaS]

  Hi and welcome to the Chiari forum,

Chiari Malformation is the malformation of the skull, the cerebellum is too small to house the cerebral tonsils and they are forced out onto the spinal cord and brain stem which can cause a multitude of symptoms.

Effacement is the thinning of the tissues.....which can result if your CSF is building up.....did they also DX you with ICP? Or any other related condition?

What symptoms have you been having?

Not everyone with Chiari is a surgical candidate....it depends on how the Chiari is affecting not only you but your overall health......some symptoms are not a reason for surgery as surgery may not relieve you of the symptoms you have....it is done to restore CSF flow and any other obstructions or compression's to the spinal cord and brain stem.

We do have a small list of Drs in Australia, should you find an experienced Dr that is not on our list here, please add it for any other members from your country that may join us here looking for help.

The list is not meant to be used as a referral nor an endorsement for those listed on it.....it is meant to be used as a tool to get started researching Drs....the names on our list were compiled by the members here of Drs they have been to, treated by and liked.

Hang in there and know you are not alone <3